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Mantle cell lymphoma (MCL)
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Calling UK tocilizumab or epipen users: How do you dispose of your self-injector? Who arranges it?
Someone on the Vasculitis forum is encountering difficulty - is expected to attend the hospital to be handed her self-injection medication because they claim there isn't a protocol for disposing of the needle.
Someone on the Vasculitis forum is encountering difficulty - is expected to attend the hospital to be handed her self-injection medication because they claim there isn't a protocol for disposing of the needle.
PMRpro
Ambassador
in
PMRGCAuk
3 years ago
Has anyone else had experience of antibiotics specifically Co-amoxiclav raising platelets?
Has anyone else had experience of antibiotics specifically Co-amoxiclav raising platelets? I've been through a Bone Marrow Transplant to treat leukemia (2015) and one of the side effects is I am susceptible to ITP, it doesn't persist like most people's rather it occurs roughly every 2 years with no
Has anyone else had experience of antibiotics specifically Co-amoxiclav raising platelets? I've been through a Bone Marrow Transplant to treat leukemia (2015) and one of the side effects is I am susceptible to ITP, it doesn't persist like most people's rather it occurs roughly every 2 years with no
Yamaha1871
in
ITP Support Association
3 years ago
More on HELP #3 Day in Hospital Possible Giant Cell Arteritis Biopsy Tomorrow. San Antonio Rose
All, More to add- after much discussion with Ophthalmology late yesterday afternoon, it was decided, based on pictures I sent them, that I might have shingles and they will postpone temple biopsy until more is known later,, Now trying to reach PCM and Rheumatologist for guidance on what to do for #
All, More to add- after much discussion with Ophthalmology late yesterday afternoon, it was decided, based on pictures I sent them, that I might have shingles and they will postpone temple biopsy until more is known later,, Now trying to reach PCM and Rheumatologist for guidance on what to do for #
SARose
in
PMRGCAuk
3 years ago
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Another HSCT question….
There are report that young people who have cll, who have done hematopoietic stem cell transplantation (HSCT) as treatment and have completely recover, have you guys heard of this? Thank you
There are report that young people who have cll, who have done hematopoietic stem cell transplantation (HSCT) as treatment and have completely recover, have you guys heard of this? Thank you
krikri1989ho
in
CLL Support
3 years ago
Long term tocilizumab use
Hello all - I wonder if anyone has experience of long term tocilizumab use. I have been having injections every 4 weeks. I began weekly and gradually moved to 4 weekly. I have been on TZ for 3 1/2 years now. I am now getting fairly regular relapses - especially after overdoing it. Have felt really
Hello all - I wonder if anyone has experience of long term tocilizumab use. I have been having injections every 4 weeks. I began weekly and gradually moved to 4 weekly. I have been on TZ for 3 1/2 years now. I am now getting fairly regular relapses - especially after overdoing it. Have felt really
christine2715
in
PMRGCAuk
3 years ago
Husband Update
It seems like so long since I’ve updated, but it’s been only a few months. Husband is doing… ok. We’ve just received news that they've found a donor for his stem cell transplant and is scheduled to be admitted at the end of next month. It’s all become very, very real. The kids and I won’t be able
It seems like so long since I’ve updated, but it’s been only a few months. Husband is doing… ok. We’ve just received news that they've found a donor for his stem cell transplant and is scheduled to be admitted at the end of next month. It’s all become very, very real. The kids and I won’t be able
TM76
in
MPN Voice
3 years ago
Pies!
Whilst I was moaning on about all the restaurants that have given up on GF items on their menus I was thinking too of brighter things. Pies! I love a pork pie and cornish pasty, steak pie. I could go on but you get the picture. I have found an online outlet that sells the lot, all delicious and I want
Whilst I was moaning on about all the restaurants that have given up on GF items on their menus I was thinking too of brighter things. Pies! I love a pork pie and cornish pasty, steak pie. I could go on but you get the picture. I have found an online outlet that sells the lot, all delicious and I want
Kim1950
in
Gluten Free Guerrillas
3 years ago
Doctor wants to start Venetoclax today but recent blood work shows evidence of AIHA but Doctor still says start Ven
shouldn't AIHA be treated first? hemoglobin dropping weekly down from 14.7 2 months ago now 10.7 Haptoglobin less than 31 LDH almost 700 Doctor says still start Venclexta tomorrow but why not hold off until AIHA is controlled with steroids or Rituxan? I think the Rituxan will put him in control of
shouldn't AIHA be treated first? hemoglobin dropping weekly down from 14.7 2 months ago now 10.7 Haptoglobin less than 31 LDH almost 700 Doctor says still start Venclexta tomorrow but why not hold off until AIHA is controlled with steroids or Rituxan? I think the Rituxan will put him in control of
Palmetto
in
CLL Support
3 years ago
Bispecific T-Cell Engagers (BiTEs) and Mantle Cell Lymphoma
Hi Everyone, haven't been here for ages. Misdiagnosed with CLL in 2014. Turned out to be MCL/CLL hybrid. Auto SCT May 2016 which held 'til now. Just started on Ibrutinib. Very excited about this: https://www.youtube.com/watch?v=SZlvJbCTJts&t=3s Potentially, more effective than CAR-T and less invasive
Hi Everyone, haven't been here for ages. Misdiagnosed with CLL in 2014. Turned out to be MCL/CLL hybrid. Auto SCT May 2016 which held 'til now. Just started on Ibrutinib. Very excited about this: https://www.youtube.com/watch?v=SZlvJbCTJts&t=3s Potentially, more effective than CAR-T and less invasive
zentangle
in
Non Hodgkin's Lymphoma Friends
4 years ago
More on Covid vaccines and the inmunocompromised.
Just saw this in the news and felt it was worth sharing. Lots of peopleScientists seek Covid protection boost for people with weakened immunity AFP, Jul 06, 2021, How effective are Covid vaccines if your immune system is compromised by HIV, cancer or a recent organ transplant? Faced with very little
Just saw this in the news and felt it was worth sharing. Lots of peopleScientists seek Covid protection boost for people with weakened immunity AFP, Jul 06, 2021, How effective are Covid vaccines if your immune system is compromised by HIV, cancer or a recent organ transplant? Faced with very little
Iupiter
in
CLL Support
3 years ago
Fatigue and very hot flushes
On 5th June I reduced to 7mg but since then I have found the basics of life a massive struggle and I’m normally a few miles a day person. Various limbs have become painful even an old break in my wrist is giving me jip. When these hot flushes come on I feel absolutely drained so I’m going to add an
On 5th June I reduced to 7mg but since then I have found the basics of life a massive struggle and I’m normally a few miles a day person. Various limbs have become painful even an old break in my wrist is giving me jip. When these hot flushes come on I feel absolutely drained so I’m going to add an
AnniesRyder5
in
PMRGCAuk
3 years ago
ANXIETY SUFFERER ALONG WITH LUPUS
Hi All, is anyone suffering with Anxiety?(that's probably a dumb question.most of us have it. I has diagnosed late in life about five years ago. My problem is that I suffer ANXIETY big time. Which I can't sleep without an Aid.Even before I has diagnosed with Panniculitus. I didn't't sleep without a
Hi All, is anyone suffering with Anxiety?(that's probably a dumb question.most of us have it. I has diagnosed late in life about five years ago. My problem is that I suffer ANXIETY big time. Which I can't sleep without an Aid.Even before I has diagnosed with Panniculitus. I didn't't sleep without a
Goinglong10
in
LUPUS UK
3 years ago
Is it common for CLL patients to undergo hematopoietic stem cell transplantation (HSCT) as treatment?
Hi guys! My husband was looking around for information and he found about this, we were wondering if this is a common treatment? Thank you very much!
Hi guys! My husband was looking around for information and he found about this, we were wondering if this is a common treatment? Thank you very much!
krikri1989ho
in
CLL Support
3 years ago
Vaccine efficacy for COPD and immune compromised people
Hi everyone. Have any of you had any discussions with your medical team with respect to the efficacy of the Covid vaccines for people with compromised immune systems and COPD. I have COPD as well as having a stem cell transplant due to multiple myeloma. I have been in remission for 8 years but it is
Hi everyone. Have any of you had any discussions with your medical team with respect to the efficacy of the Covid vaccines for people with compromised immune systems and COPD. I have COPD as well as having a stem cell transplant due to multiple myeloma. I have been in remission for 8 years but it is
macnsyl
in
Lung Conditions Community Forum
3 years ago
Hi, is it possible to still have PA even though my parietal cell and intrinsic factor antibody are negative and my b12 is low?
Low b12 and negative parietal cell antibody and intrinsic factor. Can it still be pernicious anaemia
Low b12 and negative parietal cell antibody and intrinsic factor. Can it still be pernicious anaemia
Rocky213
in
Pernicious Anaemia Society
3 years ago
Introduction of myself, PMF, from China
Hi, I'm Qi, from China, I'm 34 years old this year. I confirmed PMF in 2017. At that time, the splenomegaly was high, but it was not very high, and it was not so high all the time. These symptoms began to happen to me one after another as early as 2013. JAK2V617F gene mutation, there is only one mutation
Hi, I'm Qi, from China, I'm 34 years old this year. I confirmed PMF in 2017. At that time, the splenomegaly was high, but it was not very high, and it was not so high all the time. These symptoms began to happen to me one after another as early as 2013. JAK2V617F gene mutation, there is only one mutation
merlisa
in
MPN Voice
3 years ago
Continuation of Tocilizumab treatment in UK needed- Help or advice needed please.
I know not many people with LVV/ GCA in the UK are being treated with Tocilizumab ( only 250 according to NICE literature) but in the absence of any advice or help from my Rheumatology consultant, I am hoping someone on this forum could advise me. NICE still hasn’t rethought it’s advice
I know not many people with LVV/ GCA in the UK are being treated with Tocilizumab ( only 250 according to NICE literature) but in the absence of any advice or help from my Rheumatology consultant, I am hoping someone on this forum could advise me. NICE still hasn’t rethought it’s advice
Suzita76
in
PMRGCAuk
3 years ago
Recently diagnosed with MF
Hi Recently been diagnosed with MF at the age of 53, and the consultant at Guy's has proposed stem cell transplant later this year, has anyone had this treatment and if so any suggestions? I have a potential sibling match which is currently being investigated. Given the recent diagnosis still taking
Hi Recently been diagnosed with MF at the age of 53, and the consultant at Guy's has proposed stem cell transplant later this year, has anyone had this treatment and if so any suggestions? I have a potential sibling match which is currently being investigated. Given the recent diagnosis still taking
67Red
in
MPN Voice
3 years ago
Tocilizumab
If, as I understand it, NHS England only funds this drug for one year per individual then I will reach the end of my allocation in late July. It has taken months on this drug to cover the reduction in Prednisolone and I am now down to my lowest level ever. My Ophthalmologist is also discussing reducing
If, as I understand it, NHS England only funds this drug for one year per individual then I will reach the end of my allocation in late July. It has taken months on this drug to cover the reduction in Prednisolone and I am now down to my lowest level ever. My Ophthalmologist is also discussing reducing
AncientMariner
in
PMRGCAuk
3 years ago
A further update on the old taper journey ...
Hello again friends on this long and treacherous journey, I am reporting back with some good news, yay! While I have remained on the three weekly (rather than weekly or fortnightly) tocilizumab routine, my inflammation has remained under control, so far. I have just moved to 1.75mgs pred on my cautious
Hello again friends on this long and treacherous journey, I am reporting back with some good news, yay! While I have remained on the three weekly (rather than weekly or fortnightly) tocilizumab routine, my inflammation has remained under control, so far. I have just moved to 1.75mgs pred on my cautious
LemonZest11
in
PMRGCAuk
3 years ago
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